I remember the exact chair I was sitting in. One of those cold office ones with plastic arms, like they were trying not to be too comfortable on purpose.
The doctor didn’t say it cruelly. She didn’t even say it dramatically. Just calmly, like it was another Tuesday.
And still—everything inside me cracked.
The word didn’t even register right away. I nodded like I understood, like I had any idea what to do next. But in my head I was just repeating, “This isn’t happening. Not her. Not us.”
I wish I could go back to that moment and look myself in the eyes.
I’d tell her that it’s okay to cry in the car. That you’re not a bad mom because you secretly googled “mild forms” while hiding in the bathroom. That it’s okay to feel robbed of something you can’t quite name.
But I’d also remind her that strength comes in unexpected forms. That the road ahead is going to be long and tough, but there will be moments of clarity, moments of joy, and moments of unexpected grace.
I would tell her to take a deep breath and not rush through this. There is no timeline for healing, and there’s no guidebook for being a parent to a child with a diagnosis that shifts everything. I would say, “Give yourself permission to feel what you’re feeling, but don’t let it define you.”
That day, the doctor had told us that my daughter, Lily, had been diagnosed with a condition that would change the course of her life. It wasn’t something terminal, but it would be lifelong. Her body, as it grew, would be different from others. She would struggle with things other kids wouldn’t—things I couldn’t quite comprehend in that moment. I remember asking, “But what does this mean? What will happen to her?”
The doctor explained it gently, in medical terms I could barely wrap my head around. All I could hear was a silent scream inside me. How could this be happening? Why my daughter? Why now?
That’s the thing with diagnoses like this. There’s no manual for how to cope when you’re told your child is going to have to fight battles that you can’t fight for them. You’re left in this strange place where your world spins a little too fast, and your heart beats in rhythm with all the fears you can’t shake.
The first few months after Lily’s diagnosis were a blur. I put on a brave face for her, for my husband, and for everyone else. I tried to be the rock, the unwavering presence that everyone needed me to be. But inside, I felt like I was drowning. There were days when the weight of the situation was so heavy, I could barely get out of bed. I found myself crying in the bathroom more than once, feeling so helpless, wishing I could do more, wishing I could just take the pain away from her.
But as time went on, I started to realize something important—my daughter wasn’t broken. She was not the sum of her diagnosis. Yes, she was different, but she was still Lily. She was still my sweet, funny, creative girl who loved to paint, who loved to sing, who loved to dance around the house in her pajamas. I wish I could tell myself, back then, to focus more on that. To remember who she was before the diagnosis, and to never forget that she was still the same person.
I started learning, little by little, what it meant to be her mother in this new world we found ourselves in. I learned to ask the right questions, to advocate for her in the way only a parent can. I learned that there were amazing doctors and specialists who genuinely cared, and that there was a network of families who understood exactly what we were going through. I wish I could have told myself then that I wasn’t alone. That while this path was harder than I ever imagined, there was an entire community of people walking it too.
The hardest part wasn’t always the physical challenges Lily faced—it was the emotional ones. I remember one evening, just a few months after her diagnosis, she looked up at me with tears in her eyes and asked, “Why can’t I be like everyone else, Mom?”
It broke my heart. All I wanted to do was shield her from those moments, to make everything better for her. But instead, I had to be honest. “Lily, you’re special. You’re strong, and you’ll do things in your own way. You might be different, but that’s okay. That’s what makes you, you.”
I wish I could tell myself back then that those words would mean so much more in the years to come. That she would repeat them to herself when she had to face things that felt impossible. I wish I could tell myself that it’s okay to let her feel her emotions, to let her grieve for the things she’d never be able to do as easily as others. That it was okay for me to be a shoulder for her to lean on, but not to carry the weight of the world on my own shoulders.
There were dark days when it felt like nothing would ever feel normal again. But in the quiet moments, I began to see something remarkable happening. Lily was growing into this person who faced challenges head-on. She had her struggles, of course, but she also had an immense amount of courage, and that courage was contagious.
I remember one day, we went to a park, and Lily was playing with some kids she’d just met. I saw them laughing together, running, jumping, and I felt a pang of sadness. My heart wanted to protect her from every scrape, every moment of feeling different. But then, Lily stopped and turned to me, grinning from ear to ear. “Mom, look! I’m keeping up with everyone!”
In that moment, it hit me. She wasn’t asking for anyone’s pity. She wasn’t looking for anyone to treat her differently. She just wanted to be seen, to be heard, to be part of something. And in that moment, I realized something else—I didn’t need to “fix” her. She wasn’t broken. She just needed to be supported, to be understood, and to be given the space to be herself.
I wish I could tell myself that earlier. That my fears of her never fitting in, of her never being enough, were unfounded. I would tell myself to hold on to those small victories, to cherish every moment when she defied the odds, even if those victories seemed small to others. They were monumental to us.
As the years passed, I found myself looking at the world differently. Yes, there were hard days—days when I could see the challenges Lily faced and couldn’t fix them. But there were also days when she surprised me, when she showed me what true strength looked like.
And here’s the twist, the karmic twist that I never saw coming: By learning how to advocate for my daughter, I found myself advocating for others in ways I never thought possible. I joined support groups, became involved in nonprofit organizations, and helped raise awareness about conditions like Lily’s. My daughter’s diagnosis had led me down a path I never imagined, but it was a path that made me stronger, more compassionate, and more determined to help others.
Lily’s condition didn’t define her—it didn’t define us as a family. What defined us was the love we had for each other, the way we showed up for one another, no matter what. The more I embraced the reality of her condition, the more I found my own strength. And the more I did that, the more I was able to help others who were struggling with their own challenges.
So, what would I tell myself on the day Lily was diagnosed? I would tell myself this:
“It’s going to be hard, but you’re stronger than you think. You have what it takes to get through this, and so does she. This is a journey, not a destination, and you’ll find beauty in the struggle. And when you look back, you’ll see how far you’ve come.”
To anyone out there going through something similar, know that you are not alone. Your struggles don’t define you, and the challenges you face today are building you into someone stronger tomorrow. Lean into the love you have, embrace the moments of joy, and remember that even in the hardest times, there is always hope.
Please share this story with anyone who might need a little encouragement. We’re all in this together.
